Cancer, Christmas and my Mental Health

One thing I've discovered about being in active cancer treatment is that I am so involved in the treatment, and dealing with the side-effects that when other stressful situations occur, my frustration level almost immediately rises to red-hot. This happened over the summer when I had to deal with the plumbing issues and not being able to get a hold of the property manager. I also had a medical bill issue from February when I underwent the biopsy, and the billing department at the pathology lab were basically being idiots and I was biting my tongue trying not to tell them how I felt. Luckily I managed to survive both situations, but it was a lot of work and took up too much of my already low energy.

At present, I'm on a break from the SCCA and my biggest concern regarding my treatment is remembering to take my pills 3 times a day. No more skipping because I'm too tired at night, as there is medicine I'm taking that I can't just skip a day. So, when I was faced with a stressful and challenging situation, I handled it much better than I did the situations over the summer.

My very challenging and heart wrenching situation over the past several weeks has been the health of my 19-year-old cat, Kitten. It's a very difficult line between trying to keep her healthy and overdoing treatments that are going to impact her quality of life.

Over the past week or so, Kitten started getting weaker and weaker and was not very interested in eating or drinking. I think she was really having a hard time adjusting to losing 5 teeth, even though her mouth was completely healed. Finally, on Tuesday the 23rd. I called my vet at home. He is on vacation until January 6, but he gave me his home phone number in case I had concerns about Kitten. So, I called him and we met at his clinic. Kitten was dehydrated enough that she needed an IV. The vet also gave her several steriod shots to stimulate her appetite. I brought her home and gave her some food which she ate right away. I felt that she was going to be able to turn things around and would be stronger by the next day. However, as the day wore on, Kitten got weaker and weaker to the point that could no longer stand up. It's like her legs were boneless and she would just crumple when I tried to stand or sit her up. Since she was unable to use the litter box, I kept a puppy training pad under her. I was up all night making sure the pad was changed as needed and trying to feed her. I was still hopeful that the medicine would kick in and she would get better. But, at 4:00 am she had a seizure and afterwards I knew that she would not survive the day. I called the vet again and we said goodbye and now Miss Kitten is young and free and playing with Simon, who was always her best friend.

Out out damn port!

I'll be getting my port removed on January 2. Bye, bye giant purple people eater!

Leave it to me to get all of the "rare" side-effects

Ok.. tamoxifen. Can I just say muscle pain from head to toe? good times. Drugs are not really helping, although I'm not taking any narcotics. And, I don't want to. I can function, just really slowly and grimacing.

My doctor thinks the pain will diminish over time. We'll see. I hope so, because 5 years is a long time to live feeling like I've worked every muscle too hard in the gym.

Quick update

Kitten came through her surgery with flying colors. She's a little more fragile than usual, but she's all about eating, so I think she'll be just fine.

Zusa has osteoarthritis in her hips. Not sure about her shoulder yet, but she's on anti-inflammatories and they are working well so far. Still waiting for that heated dog bed though. I Hope it comes tomorrow before the weather gets really cold.

In other news, I'm dealing with a lot of muscle pain all over my body. Not sure if it's the tamoxifen or what. Actually, I think it must be. I spoke with the SCCA pharmacist today who was no help at all. I'm so shocked.

I have a call into my primary care doctor about the lower leg edema. My left leg is more swollen than my right leg, although it doesn't hurt and isn't showing signs of a clot or infection. My oncologist doesn't really know anything about using diuretics, so I think that will be best managed with my doctor in Olympia.

I sent an email to my oncologist earlier this week because after doing some research about tamoxifen on the web, I discovered several studies that showed premenopausal women losing quite a bit of bone density on tamoxifen. Since I'm going to be on it for 5 years, I don't want to find out down the road that I have osteoporosis. I asked about getting a baseline bone density exam (DEXA scan) and a Vitamin D level, both of which she agreed to. It's weird though, that these things wouldn't be done automatically. Anyway, it just goes to show that you really do have to be your own advocate when it comes to health care. I can't imagine going through this without some knowledge of medicine. Even though I don't have an oncology background, I understand the basics. And, I work with a bunch of nurses, so that all helps :)

Some kind of normalcy

It was very strange to look at my calendar for this week and see no medical appointments. Not one. Not only am I done at SCCA until January, I've also scaled back on physical therapy to every two or three weeks. It's a weird feeling when life has become one appointment to the next to suddenly not having any. I almost feel as though I've lost some part of my identity...I've gotten used to the attention. I think it must be a difficult switch from active treatment to follow up care. I'll find out this spring.

Yesterday the oncology nurse called me to talk about removing my port. She was giving me instructions, but then asked me if I was sure I wanted it removed. Uh, yeah. Why is this hard to understand? My oncologist told me I could keep it in for another year if I wanted. Why would I want to do that? Are they anticipating cancer coming back so quickly? Is there more chemotherapy in my future that I'm not aware of? Or, are they so used to little old ladies with horrible veins that they feel the need to try and talk all of their patients into keeping the port? Well, I'm having none of that. I want the thing out of my chest, for many reasons, including the fact that it represents 24 weeks of not-so-fun times that I just went through. So what if I might have to get an infusion every three months? Give me a damn IV. My veins are just fine.

I have decided against participating in the research study that I looked at last week. I want to get the Zoladex shot and don't want to take the chance that I might be randomized into an arm that doesn't include it. However, at this point I have to wait and see if my ovarian function resumes before they will start giving me the shot. That means getting my estrogen levels checked every couple of months and/or getting a period. I haven't had one since May and I certainly haven't missed it! One of the things that has to be watched carefully with the Zoladex is the potential of bone loss. There is another study that looks at three bisophosphonates which are drugs that help prevent bone loss. One of the drugs is Boniva and another is Zometa. Zometa is given via IV every month for 2 years, but still not worth keeping the port!

A week out from the last chemo infusion and I'm still feeling like I'm getting treatment. Last weekend was hard from the standpoint of not having any energy and still feeling very weak. I'm hoping by the end of the week to have a noticeable difference in my energy level. I'm also still dealing with constant eye watering, blood clots in my nose, and my nails are not done wreaking havoc on themselves. Also, my legs and ankles are still swollen from "capillary leakage." Gotta love that. I'm wearing my Crocs today because my ankles and the tops of my feet are too swollen for regular shoes.

So I've been getting to know my vet very well lately. Not only was Mea's eye injured by her sister.. she is all better after a few days of eye ointment (fun!), but Kitten is going in tomorrow for surgery. She has a skin cancer on her neck and an abscessed tooth. Those will both be removed and she'll get a dental cleaning as well. Kitten is 19 this month, but she is healthy. Her heart and lungs are strong and she's not suffering from kidney disease like a lot of old kitties. I'm pretty pragmatic when it comes to what I'm willing to do to prolong the life of an older cat. I wouldn't do something major that would impact the quality of her life in order to eke out another year or two. But, if by doing this surgery her quality of life gets better and we don't have to do anything else, then I'm all for it. I am also taking Zusa in tomorrow when I drop Kitten off. Over the weekend she started limping when she got up from lying down. Her left shoulder seems very stiff and I think she needs some anti-inflammatories. I suppose I should mention that Kira is just fine and doesn't need to go to the vet at all :)



I have completed 99% of my Christmas shopping. I haven't got anything for my Dad yet. I did all of my shopping online this year which made it easy. Over the weekend I also got everything wrapped. I guess I got tired of the boxes all piled up in the living room. Of course, now there are gift bags, but at least it's done.

I have also done a lot of shopping for me recently. All of this weight loss has been great, but I have no clothes that fit. I've been pretty successful shopping online for clothes. Only one or two things haven't worked out.

I have to say though that the amount on my credit card is quite scary. I have been putting off looking at it, but I finally did yesterday. The nice thing is that I have a sweet check coming from Aflac this week and I will be able to pay it all off.

Phase 3

I met with my oncologist today for a check-up and to discuss the next step in the regimen. She talked to me about tamoxifin and all of the risks and benefits of taking it. We talked about whether it would be beneficial to stop estrogen production all together for the next 5 years. The research has shown that young women with aggressive breast cancer (that's me) have less likely recurrence of cancer than taking tamoxifin alone. Her recommendation is that I get this shot for the next 5 years.

There is an ongoing research study that compares tamoxifin to tamoxifin plus a shot to stop estrogen production. The study is randomized though, so I have chance of ending up in the tamoxifin only group. The research coordinator is going to email me the protocol and consent form so I can review them, but I'm not sure I want to risk being put in that group. There's nothing wrong with taking tamoxifin by itself, it is considered the "gold standard" of care, but I sure as hell don't want to go through this crap again and I'm willing to do what I can to avoid recurrence.

I'm so glad that I don't have to go back to SCCA until January!

Oh, and I have to share.. I just recieved these scarves that I ordered as an end of chemo present to myself. So pretty!

Weeks 23 and 24

Well, I can't believe it.. I'm done with chemo! I'm very happy about that. Things were getting to the point where I was getting so burned out on going to SCCA every week that I was ready to snap someone's head off.

During the second to last week, I was having a lot of frustration and anger towards my oncologist and case manager. Instead of letting the anger go so I could approach my issues more rationally, I was feeling very emotional about them. Because of this, I met with the chaplain and told her what my issues were and that I just needed to let them go and get back to Center. She was really wonderful in helping me do just that. Now I feel like I can approach my oncologist about my biggest concern (not diagnosing a potentially serious side-effect at my follow-up visit and that the case manager is not tracking these trends) calmly and without being accusatory. I realize they are short-staffed in this area, but that is not an excuse for letting patient safety issues slide.

All of this is part of the reason why I refuse to go back to SCCA for the rest of the month after tomorrow's follow-up appointment.

On my last day, which was last Friday, I was fasting before my labs were drawn and I had forgotton that I wasn't coming in at 7:00, but at 11:30!! I got in early and then had a nice lunch at the little cafe. I have to say, they make a super yummy mushroom/cheese/potato soup. In celebration, I wore my "Hey Cancer!" t-shirt, which didn't make it easy for the lab tech, but I really didn't care!! At the end of my treatment, 5 or 6 of the nurses and tech staff came in and put on funny glasses and sang a funny song all while blowing bubbles. They took a picture of me and Jane, which is hilarious because the bubbles are going everywhere.



One of the questions that I need to bring up on Friday with my oncologist is when the port will be removed. I find it odd that no one has mentioned removing it (another little bit of frustration) and I have a feeling that if I don't mention it, she won't either. I might not say anything and just see what happens. I can always "suddenly remember" in an email to her later. One thing is for sure.. I'm not doing anything about it until January!

I met with the radiation oncologist Monday to start that process. They wanted me to come in tomorrow to do a simulation under CT, but I've put that off until January as well. That's mostly for insurance reasons.. I want to be sure I use up all of my out-of-pocket co-insurance for next year. A two-week delay in treatment isn't going to matter in the grand scheme of things. The daily grind of radiation is sort of looming over me like a black cloud.. that is going to be hard for me. But the radiation tunnel is much shorter than the chemo tunnel, even if there are more treatments.

On Thanksgiving my brother and I posed as twins for pictures. Ha!